Amazing because I can walk and jump and go all day and not once have to sit to catch my breath. Notice I didn't say run. That has more to do with lack of coordination and muscle tone on my part, not lack endurance for the lungs.

Ordinary, because they just feel like mine. They work in harmony with my heart and the rest of my vital organs to get me through each day. Just like they've always been here. I've heard others say the surgeon told them the lungs were a perfect fit, or that they were pristine. I don't know if the surgeon told my family this, but I've never been able to get any of the doctors to tell me one bit of info about these lungs. I don't know if they came from a male or female, young or not so young, tragic accident or suicide. I know nothing, but once we jumped those initial hurdles, these lungs and me, we go together quite beautifully.

Back in 2000, the first time transplant was mentioned, I went through the grueling evaluation process at UNC. Towards the end of the eval, I sat in a tiny exam room with a pulmonary doctor and a surgeon and they set about to scare me to death. I left certain I did not want a transplant. I remember something being said about the short life expectancy and the horrible side effects then I heard a lot of blah, blah, blah and I wanted to run.

When I went to Duke, I got some of the same speech, but not the tone wasn't as ominous. The main difference being, this time I knew I was getting close to the time. The first go round, I wasn't on oxygen, I was working full time. I felt healthy. Especially considering my lung function was about 25% at that time. Then several years ago, maybe 3 or 4 I had to start wearing oxygen at night. Then with activity, then pretty much full time. Things were progressing. I tried very hard to slow the progression. I tried to eat healthy foods, took vitamins for respiratory health, avoided anyone who was sick and did what my doctor told me to do. I did my breathing treatments every day, I went to the doctor the first sign of infection and I took all my antibiotics. In the last couple of years it required IV antibiotics to adequately treat infections. I put a lot of effort into trying to maintain what little lung function I had left.

Even being oxygen dependent, with 17% lung function, I was not excited at the prospect of transplant. Still, had those horror stories in my head. But somewhere along the way I learned about a couple of online support groups. The members have either had or are awaiting transplant and or their families/support people. Through these groups I met more and more people living a good life after transplant. 5, 10, 15 even more than 20 years out. Sure, there are those who struggle, but I've never heard one say they wish they had never had the transplant. No matter the struggle, it's always better than the struggle to breathe. This gave me a glimmer of hope that life would be better. I never considered myself sick and thought that even with my condition, I had a wonderful life and I didn't want to roll the dice and risk shortening that life. I would have rather lived with limitations than had my life span shortened. That was crazy thinking because as we know, we aren't guaranteed one minute. And I would find out after surgery, those tired old lungs of mine didn't have a lot of months left in them.

So, I hope I have many years ahead of me. Years to watch my children grow older and my grandchildren grow up. Years to go on adventures with Mitch. Years to spread the word about organ donation. No matter what the future holds, I have not a moment of regret .

This was in my first fortune cookie the week I came home

That was a lot of talking and I still haven't said much about life after transplant. Well, they told me it would be a lifetime of meds, and that's true. I take a lot of meds and some of them have unpleasant side effects, but are they debilitating? Do they keep me from doing anything I want? No! Well, maybe a few things. I have to be very careful in the sun because having your immune system suppressed makes you more likely do develop cancers, skin cancers in particular. Sometimes I wear a mask in public, but not always. It depends on the situation. I try to be careful but mostly use common sense. I wash my hands a lot and use hand sanitizer frequently when in public. I can no longer eat at buffets, but I never really liked them before anyway. I can't eat cold deli meat because of the risk of listeria. I do miss a ham sandwich, but eh, I'll get over it. Grapefruit interacts with the meds so none of that. Never ate it anyway, not a problem. I have to be careful when working in the yard or gardening because molds and fungi (ha, isn't that a funny word) live in the soil and thrive in rotting leaves. At first, I said no problem. I haven't been interested in gardening for years. Well, it turns out, I just didn't feel up to gardening or yard work. I actually had to make Mitch let me try using the push mower (with a mask of course). Just to see if I could. I was smiling so big behind that mask, because yes, I could! No problem at all. He finally got all antsy and took it away from me, but I could have continued. Now that I have energy I want to work in the yard and plant flowers.

I enjoy eating (a little too much). Before I ate like a bird and had very little appetite. When you have low lung function, even eating is tiring because it takes precious energy to digest food. I was so thin for years because my body worked so hard to oxygenate, that the calories I took in were needed to simply fuel basic life functions. While waiting for transplant and in the weeks after, I was encouraged to (more like instructed to) gain weigh. Eat, eat, eat. Eat high calorie foods and eat often. At first it was hard, still no appetite and nothing tasted good. A physical therapist at pulmonary rehab looked at me one day and said you have got to eat. Unless you throw up, eat. It doesn't matter how it tastes, just get it down. So, I went home that day and at some chips. They weren't good, but I ate them any way. The rest of that day and the next and the next, I ate, even when I didn't want to. It was about that time I turned the proverbial corner. I started improving and felling better. Then food started tasting better. There were still some things that didn't taste quite right, but more was good than wasn't. I've gained all the weight they wanted me to (and then some). I enjoy foods I've never tried before. Some people believe you take on some of the qualities of your donor, I don't know if that's true, but I have noticed subtle changes. I think it's only fitting that part of this person who gave so much to me will live on in and through me and hopefully shine through.

Yes, there are a few things I can't do (very few) and I have some minor medication side effects (hello chubby cheeks and round tummy). Yes, that's the prednisone and not the donuts!

But there is so much more I can do! I walk an average of 5 miles a day. I can go for long walks on the beach. I can carry my own beach chair! I'm so happy to feel as if I can carry my own weight. To live a fulfilled life, I believe it is so important to feel as if you contribute and enhance the lives of those around you. I never liked feeling like people had to do things for me because I wasn't able. Mitch works so hard, and for many years, there were lots of things I just was not able to help with. (like yard work) Now it is amazing to feel like a helpful part of the team.

I will have to be monitored by the transplant team frequently. Right now it's every three months. There will always be the risk of my body rejecting the lungs, but the good news is, there are treatment options for that. Of course I worry. Every time I have a bronchoscopy I pray that no rejection is found, but I don't let it consume me. I thought I would. Knowing my personality I thought I would live life in constant fear of the what ifs. and the possibility of rejection. Going through what I did after transplant changed me. I think we fear most what we can't see or understand. Fear of the unknown. I feel like I came very close to death and I got through it. But also, I know that during that time, I felt as if I was in the arms of the Lord. Even if I had not made it, I would be ok. From that point on, the rest is just gravy!

Bayleigh made this for me and it hung on the wall in front of my bed, moving with me from room to room. I read it hundreds of times and it provided a great deal of comfort at times I needed it most.

I'm sorry to go on and on so much, but I just want to shout from the rooftops how grateful I am and I want to let others, who may be in the beginning stages of a similar journey, know not to be frightened away by scary statistics. Those are just numbers. You have it in you to do hard things!

Please if you have any questions, don't hesitate to ask! My hope is that my story can help someone else in some small way.

And if you want to see more of the life these lungs are allowing me to live, check out my Instagram feed. There's a link over on the right.

July 06, 2016

Going trough a double lung transplant and subsequent decortication of both lungs was without question the most challenging event of my life.

I've read many recounts of people who woke up from transplant amazed at the new ability to breathe. I did not experience this. Having had extremely poor lung function for many years I had developed breathing patterns that compensated for that. I took frequent shallow breaths. I did not know how to breathe diaphragmatically, something that comes naturally to healthy people. Habitual shallow breathing, the discomfort of having chest tubes, infection brewing, all these things made it difficult to feel like I had bright shiny wonderful working lungs. I didn't really bond with my new gift for a while. Don't get me wrong, I was very grateful, but I had an inkling these lungs didn't feel at home and weren't ready to be friends just yet.

I continued to require oxygen with activity when I was discharged from the hospital. Not what I had hoped for. I was very weak on my feet and had to use a walker. I still had zero appetite, almost 100% of my nutrition was via feeding tube. I couldn't take a shower, but I was out of that hospital. I was not attached to wires and could sleep in my own bed. It may not have been quite the scenario I had envisioned, but I knew the worst was behind me and I had survived. I got through some pretty difficult days because of more love, support and prayers than I knew possible.

I was not able for many reasons to do much communication via social media while in the hospital. I'm always amazed when folks update on their condition 2, 3, 4 days out. Heck, the whole time I was in the hospital, I couldn't coordinate my brain, eyes and fingers to read or update facebook. Thankfully during that time my sister did an amazing job of sharing updates and petitioning for prayers when I was at my worst. No one asked her to do this, but it was surely a need she filled and I have only recently gone back and read and realized what a good job she did. Thank you Erica for taking care of that when I was unable and Mitch really did not have the time.

The first order of business upon settling back in to the apartment, was organizing my massive supply of meds. Kelli took care of that because honestly, my brain was still not functioning at 100%. If you're wondering if I have to take all those pills, the answer is yes. Some of them I take multiples of, multiple times a day, for a total of around 34 pills a day. At first it was a time consuming task. I swallowed them one at a time. Now, I just throw back the whole handful. A handful in the morning, a few at lunch time, dinner time and another handful at bedtime.

I had a clinic appointment the day after discharge and to my delight the doctor removed my trach canula. Just that simple, he deflated a little collar that kept the tubing in place and just pulled it out right there in the office and covered it with some gauze. There was a hole in my neck, big enough to stick your finger in, that he just covered with gauze!. The resilience of the human body never ceases to amaze me. Mitch was a little concerned that no stitches were required to close a rather good size hole in my neck that leads to my trachea. It is a little mind boggling to think that it just heals on it's own. I do have a little scar, but the hole is completely closed. It only took a couple of weeks for complete closure. Wow! Just, wow! I'm telling you, the wonders of God's amazing creation, and the miracles of modern medicine... I'll never stop saying WOW!

I was looking kind of rough, I weighed 87 pounds and felt more like an 80 year old. Mitch pushed me in a wheel chair at the clinic and at the apartment I used a walker. Only for a couple days inside then I was able to navigate the apartment slowly. I had to wash my hair in the kitchen sink, because I still couldn't shower. Let me back up here a bit. So, I think I mentioned in one of the previous posts that I went a long time without washing my hair. From November 21st to January 6th as a matter of fact. Initially, my hair was way down at the bottom of my list of concerns. Luckily for me, I happened to get it cut and colored the day I got the call. It looked pretty good the first couple of days. Then bedhead began to set in.. It was sticking out in all kinds of crazy places, but not terribly greasy till a week or so in. The nurses provide you with a cap that is heated in the microwave. It looks like a shower cap but contains a solution that is supposed to clean your hair. I'm not sure what it did to my hair, but clean, it was not. We tried this several times over the next few weeks. Finally we had to call in the pros. Sometime in early January I saw myself in the mirror for the first time. YIKES! Not my best moment. I didn't recognize the gaunt, pale, person looking back at me. My lips were chapped to the point of peeling, I had huge dark circles not just under, but all around my eyes. And that hair. You can just imagine. On the wall in my room was a flyer for a gentleman who will come to the hospital and wash, dry and style your hair. Cut it too if you so desire At that point, I didn't really care what he charged, I just wanted my hair washed with real soap and water.

Boy, that felt better!

So, back to life at the apartment. I came home on a Wednesday, Thursday I had clinic and Friday it was back to pulmonary rehab.

I was a different person than the last time I was there. I had to use the walker to make my laps around the track. I was still walking very slowly and using oxygen. I really wondered if I would ever feel normal again. When you are knee deep in the middle of something, it's hard to see change on the horizon. I was in much worse shape physically than I was in November, just before the transplant. I tried not to be discouraged, but I really thought I would feel wonderful and be breathing big, deep breaths, and really feel like a new person by this time.

I only used the oxygen for a couple days after discharge. The mind is a powerful thing, and I believe my mind convinced my body I still needed oxygen.

The first weekend I was home was wonderful, Alyssa, Casey and their families(minus one sweet Harper) came to stay for the weekend.

(Sawyer wasn't drinking the red bull, just carrying around an unopened can because he wants to be just like his daddy.)

Nothing helps to establish your center of gravity like being with your people. The ones you love and who love you.

Several of my rehab buddies who were a little further along in their recovery told me, one day you will just turn a corner. You will begin to feel like yourself again and really begin to enjoy this gift. These precious lungs. That's exactly what happened. I think I was about 2 or three weeks past discharge, and I felt myself turning the corner. Kelli had gone home for a week and said I was a different person when she returned. I was eating and gaining weight, I had kicked the walker to the curb and for the first time I was really able to begin to fully appreciate the miracle that had taken place in my life.

I think about that time my staples finally came out. I had no idea they left those things in so long!

I continued pulmonary rehab and saw improvements daily. The oxygen gone, the walker- parked, staples out, which meant I could SHOWER! Hallelujah!

I had weekly clinic visits and each week I was stronger than the previous week. At one point, I asked what my number was. Where I fell in line of the number of lung transplants performed at Duke.

I was # 1610. I proudly pinned my "lungs" on the board of miracles. (pretend not to notice I hung mine upside down, I fixed it the next week)

This chapter of my journey neared it's end when I attended clinic in late February. The doctor said do you want that feeding tube out? And I said heck to the Y-E-S! Once again, right there in the office he snatched that tube right out. I have to say, it smarted a bit. Maybe more than a bit, but it was over quickly and the last hospital accessory was gone! The doctor said when I finished my 23 sessions of rehab, I could go home to Autryville if I wanted. Yes, I wanted! I was so ready for home, but surprisingly a bit nervous. It felt a little scary to be leaving the protected little bubble I'd been living in for 5 months, but the last weekend in February we left our Durham apartment and headed home. Home to a new life. A gift from God and an anonymous hero.

The road to get here was full of bumps and twists and turns, but I wouldn't change a thing. Not an hour of a day goes by that I don't marvel at how different my life is. How full and beautiful and wide open with possibility.

I have written a letter to the donors family, trying to adequately express my deepest gratitude. How do you thank someone for giving you life and at the same time express genuine sympathy, I haven't heard back yet, but I hope to. I want to know a little about this person I call hero. Most of all, I wanted the family to know I will do very best to live this life to the fullest, never taking for granted the miracle that it is. I don't know why God chose me to receive this gift. I'm so undeserving, but so very grateful.

I came home to a yard full of yellow ribbons. With tears in my eyes and a heart so full it felt as if it may burst, I stepped into the next phase of this journey.

July 02, 2016

Before I continue the story, I wanted to say something about why I am sharing this. Before my transplant, for years, I read everything I could find about lung disease, treatments and transplant. I researched every natural treatment option, diet plan, vitamin. If I could find it via google search, I read it. Along the way I found several blogs that generously took us along their journey. Some were authored by spouses (hello Denise Rider) some by young people bravely fighting cystic fibrosis, a couple I followed through their first and then second transplant( thank you Piper Beatty Welsh) Yes, that's a thing. Sometimes the body rejects the lungs and the only option is a second transplant. I hope never to face that fate, but am comforted knowing it's an option. I took all of their stories with me as I traveled my own road through transplant and it helped the territory feel a little more familiar. I wasn't as frightened by some of the setbacks because I knew others had been through similar trials (or much worse) and triumphed. So, I feel like it's my duty to pay it forward. Maybe someone else can gain some knowledge or insight, but most of all, feel comforted and empowered.

When I left off, I was still in ICU, just waking up and the fog had not cleared from my brain before they said, OK, are you ready to walk? I was thinking, have they lost their minds? There is not a spot bigger than six inches on my whole body that doesn't have a tube going in or coming out. There were tubes and wires and hoses everywhere and all of that didn't faze them one bit. Those Duke ICU nurses are amazing human beings. They work so hard. All of my accoutrements were gathered up safely and they converted my bed into a chair that pushed me right off the end. It took a lot longer to get me ready to go than my actual walk ended up being but it was a small victory and it was the first steps toward home.

Excuse the crazy hair, I had just been cut in half! I wasn't too concerned with appearances. (and that's a good thing since it would be more than a month before that hair was washed- yikes!)

I think it was another day, maybe two and I was moved to the cardio-thoracic stepdown unit, into a room the size of a broom closet. Seriously, tiny rooms on the 3100 unit!

I was there on Thanksgiving day and I had no turkey. No dressing. No cranberry sauce. Not even cranberry flavored jello. I may have been allowed a sip of sterile water by that time, I'm not sure. Duke is very, very strict about what and when you swallow post-transplant. They are very protective (and thankfully so) of those new lungs. First you have to pass a swallow test (I did while in ICU). They run a tiny tube with a small camera on the end down your nose into the back of your throat and watch you swallow items they have dyed green. First a little milk, then some pudding, and finally a bit of little Debbie oatmeal cookie. They want to be sure everything goes down the correct pipe. I had a beautiful swallow and was cleared to swallow solids and liquids. Before I would actually be given liquids or solids, I had to pass a gastric emptying test. First for liquids then solids. Two different tests administered on different days. I passed for liquids but not solids.

They have you drink juice that has had radioactive dye added then take a series of x-rays.

They time how long it takes for the juice to move through your stomach into your intestines. So many systems are disrupted during transplant, they have to be very cautious in assuring that those systems are functioning properly after the surgery. For the solid food testing, it's the same except they give you (disgusting) egg (product) with some toast to eat. I managed to get the eggs down, but didn't ask for seconds. Apparently the eggs decided to hang around in my stomach a little too long so I flunked the solid food emptying test. At this point I was about a week post-transplant. I was feeling pretty good, but far from great. I was not getting much sleep, not eating and was expected to walk. Walk, walk, walk. 20 laps around the unit was the minimum for discharge and I think you had to do that three consecutive days.

This was taken the day I finally got 20 laps. This was on December 6th with a plan for discharge around the 9th. On December 10th I was having surgery again. Remember I said the road to recovery was a bumpy one. The first two weeks were fairly smooth. Not a cake walk, but a typical lung transplant recovery. I developed some complications that are not uncommon. Atrial fib being one. I was finally cleared to eat solid food but to my dismay, everything tasted horrible. Not just the taste, but the texture was strange in my mouth, so I had no interest in food. Not eating and the atrial fib left me exhausted. I was having some issues with anxiety because I still felt breathless. I was using my old breathing habits, taking small shallow breaths and walking left me hyperventilating. I had to go very slow and take many breaks. I saw others who were recovering, zooming by my room. Lap after lap. As the days passed and plans were being made for discharge, it seemed to be getting harder to walk instead of easier. I was having more exhausting bouts with atrial fib. I desperately wanted to go home. I was not getting any sleep, I was weak and missed my family, my Toby.

Christmas was getting closer and I didn't want to be in the hospital.

Then it was discovered I had some fluid building up on the outside of my lungs. I had a procedure to try to remove the fluid, called a thoracentesis. A needle is inserted and fluid is drawn out into a large syringe. It was unsuccessful. The fluid had flocculated, or become solid and would have to be scraped away. I would have to go back into the OR for decortication surgery. The surgery went fine but some of the chest tubes I had been able to get rid of were back and I was back in ICU for a few days. This time the 7th floor cardio-thoracic ICU was full and I went to the 6th floor medical ICU. The nurses are great, I'm sure, but they aren't trained in caring for post-transplant patients. I was there for three days without getting out of bed to walk. This was a huge setback to my recovery. I was transferred out to stepdown, but was in bad shape.

My mental status was altered because my body was retaining CO2 (carbon dioxide) I was not breathing deeply enough to rid my body of this toxic gas. I was quickly moved back to the ICU, this time the 7th floor. I had to be placed back on the ventilator to get my CO2 levels down. I have no memories of this. Within a day or two, I was taken back to the OR for another decortication and placement of a feeding tube and a tracheostomy. Again, I have no memory of this time.

I woke up in ICU very confused, very scared and very upset to learn of the trach and feeding tube. It felt like it was a giant step in the wrong direction. I was physically and mentally spent. I remember those being some very dark days. I couldn't talk and it just felt as if life was going on around me and I was trapped in a dark bubble. I had been preparing to go home and now there was no light at the end of the tunnel. Or so it seemed at the time. At one point I even requested the transplant team psychiatrist come speak with me because I was sure I was dying and no one was telling me. I was certain that the lungs were failing or I was rejecting them and I was not going to survive. I was very frightened, but all I could do was pray. I prayed and I very clearly heard my Granny's voice saying "get it together, gal".

I had the third surgery on December 15th so I spent Christmas in the ICU.

One bright spot was that Casey, who was deployed in Afghanistan was able to come home on emergency leave and was there for Christmas.

I was so glad to see that boy and his little family. I was missing his sister who couldn't visit because she was very pregnant with a little guy who was in no hurry to be born. I was so sad to be missing his birth. I'm generally an optimistic person who sees the glass half full, but I was feeling pretty mopey at this point. I was so envious when Mitch or Kelli would leave to go back to the apartment. I just wanted to do normal stuff. I wanted to get up and walk to the bathroom. I wanted to sleep more than 30 minutes a night. I wanted see the outside world. My whole body was swollen and I could barely move my arms without help. For the first time in this journey, I felt pretty sorry for myself.

Micah finally entered this world on December 28th. I wanted so much to hold and kiss him. All of those beautiful grandchildren were motivation for me to get out of that place.

It didn't feel that way initially but the trach and feeding tube were part of a plan to get me back on track and on my way home. Within a few days I was able to start weaning from the vent by spending time off during the day and breathing on my own, through the trach of course. As I progressed I was able to be tested with a Passy-Muir Valve. This allowed me to talk. I had not spoken a word for 2 weeks. I was beginning to see the light at the end of the tunnel. Goals were set that I was reaching. Staying off the vent all day, walking around the ICU unit, sitting up in the chair... small obtainable goals, getting me closer to home, Some time around New Years I was transferred back to the stepdown broom closet to continue recovery. It wasn't easy. I can not put into words how weak I was. I had lost every bit of weight I gained before transplant plus more. I had spent so much time in bed all my muscle mass was gone. I was a skeleton who had not had food for over a month. I had a feeding tube in my stomach but it was going very slowly allowing my body to adjust. (it was not adjusting well by the way). My legs were so wobbly when I walked, but I knew each step I took was a step closer to the exit doors. I kept that in mind. Every lap around the unit, I pictured one of my grandchildren and imagined I was walking toward seeing them. I had a few more episodes with atrial fib and was still not able to eat, but recovery was moving along at a steady pace. I could see my bed in my future and I could not wait to get a good night sleep.

During all this time, I was never alone. Mitch and Kelli were right by my side the whole time. They were there to listen to the doctors during rounds. They were there to speak up if something wasn't right. They were there to gather all my equipment and get me walking. They were (and this is embarrassing, but keeping it real) there to help me on and off the bedpan. They should have been given a badge and a paycheck for all the work they did. I'm sure the nurses were happy to get assigned me. Not because of me, but because I had my own personal nurses, who certainly lightened their load.

I don't think I'm alone in saying the thought of being discharged was equal parts exhilarating and terrifying. I still had a trach, a feeding tube, was not eating, had a ton of meds to learn and would be expected at pulmonary rehab. I still had staples in, almost two months after surgery, yea. Those metal guys were still hanging around. More than 100 of them. What the heck, we would figure it out, I had a grandson to meet. I had a comfortable bed waiting and a confused puppy who wondered why his mama left him. I had not seen or hugged my other 3 grandchildren for way too long. On January 13 I did a happy dance right out of Duke hospital. Well, the dancing was more in my head, I was wheeled out of there. 54 days is too long not to breathe fresh air, and I had a new set of lungs that were ready for some big, deep breaths of Durham air.

When I got back to the apartment, I had these beautiful faces waiting for me!

Next post, the road to recovery continues. It's a marathon, not a sprint.

July 01, 2016

The last post, I left off with our relocation to Durham, NC. All along this road to transplant, there have been so many small miracles and blessings. The first one came when I had to change transplant centers from UNC to Duke for insurance reasons. I have 100% faith in UNC and loved my doctors there, but when it comes to lung transplant, Duke is the leader. They are a high volume center and their wait time is much shorter than other centers.

When I first met with Duke, they scared me more than a little with their rules and regulations. They are strict, but that's what makes them so successful. In order to be accepted in their program you must agree to relocate to Durham for up to possibly a year (maybe even 2), you must attend their pretransplant pulmonary rehab and you must have 2 people willing to sign a contract to act as caregivers (a primary and secondary). Those are just their major requirements and this is to even be considered, still not a guarantee you will be listed.

Like I said before, we were so fortunate to have a travel/lodging benefit as part of our insurance, so we began the process of relocating right away. My dear, amazing, gift from God of a friend Kelli agreed to be my secondary caregiver. This selfless person agreed to give up months of her life to go with me to Durham and wait. How many people are willing to do that? Not many.

So with all the extra housewares with could scrape together we traveled to Durham on a Sunday in October, not knowing how long it would be before I saw home again. Or really if truth be told, if I'd see home again.

We got settled in and I started pulmonary rehab right away. These folks don't play. They are there to get you in the best shape possible. A boot camp of sorts. I would go to rehab and spend the rest of the day on the couch.

This was five days a week. Kelli and Mitch took turns staying with me. Mitch came home only to go to work. On his days off, it was back to Durham. When Kelli got a chance to come home, she had to catch up on her own business and work at home. I don't know how they did it, but am so glad they did. And they fed me! My job was to exercise and gain weight. I had to graduate from rehab and gain at least 10 pounds to be considered for listing.

On October 30 I got a call from my transplant coordinator saying I had officially been listed.

Things just got real! I continued pulmonary rehab and completed the 23 sessions required, then began the maintenance rehab. Not really any different, just a little more independent and meets at a different time. We continued day to day living in Durham. I'd go to rehab, I'd sleep on the couch and I'd eat. Mitch and Kelli continued taking turns staying with me and making me eat. I had clinic at least once a week, sometimes more often if I had a special test scheduled.

It was getting closer to the holidays, and became apparent we'd still be in the apartment for Christmas, so Kelli and I did some crafting to pretty up the place.

Then on November 20, a Friday, Kelli and Mitch switched off. Kelli drove home to Sampson County and Mitch was there with me for the weekend. At about 2:30am my cell phone rang. It was THE CALL. I don't remember who was on the other end, it was the coordinator on call I guess. She said a set of lungs were potentially available if I wanted them. I was on the transplant list. I knew I'd be getting this call, I was still stunned and in shock. I got up and took a shower, because I didn't know when I'd get the chance again. As I showered I began to question whether I was doing the right thing. Was I really ready, was I really that sick? Because of the intense pulmonary rehab, I was feeling the best I'd felt in a while. I also prayed for the family that was mourning the loss of a loved one. How do you reconcile being excited about the chance of a new life, when someone else's life has ended?

I got dressed and we made the short trip to the hospital. Getting the call isn't a guarantee that the surgery is going to happen. The surgeons have to examine the lungs to be certain they are "good". Once at the hospital I was taken to a pre-op area where lots of blood was collected, IVs started, Xrays... it was a blur of activity that honestly I have very little recollection of. I do know I felt completely calm and at peace. Kelli and Tegan arrived and the four of us waited.

(this was actually during a clinic visit, but it was the four of us waiting)

I have to back up and tell you about Tegan. Tegan Johnston is a (was, she has since graduated) student at UNC studying photojournalism. She was interested in following someone through the transplant process. I was happy to have the opportunity to share my story if it could be helpful to others so I agreed. Tegan had personal reasons for wanting to document a transplant story from the recipients point of view, because she had experienced it from the donor family's perspective. Her older brother had died years earlier in a drowning accident and was an organ donor. You can see just some of the moments Tegan captured on her website. And read an interview she did about our time together here. She's a very special girl and I'm so glad God brought us together.

I got the call at 2:30 am, we got word it was A GO at around 10:45am.

They took me and Tegan back to the OR at around 12:15 and the first update came at around 3 saying they were just starting and at around 8:45pm they got instructions on how to visit me in ICU, as they were just finishing up.

They first saw me around 10:30pm.

Mitch has since told me how shocking it was to see me this way. Even though they had been prepared, I guess there's nothing like seeing someone you love with so many tubes and machines connected. At this point I was intubated and heavily sedated. I had a large tube coming out of my neck that was removing my blood and oxygenating it, ECMO. I had about 10 chest tubes and I have no idea how many IVs.

When I woke up, it was Tuesday morning and it was time to put those lungs to work.

It is essential for recovery to get up and moving as soon and as often as possible. It took a village to get me and all my equipment up and moving, but down the hall we went. Not far, but it was a start. And it was exhausting!

I believe it was at shift change on this day or maybe the next I heard the nurses giving report. Being a nurse, it caught my attention when I heard the words she was a full code. What? When?

Apparently, as the surgeon began to remove my worn out, diseased lungs, it became apparent they would not sustain me through the surgery and it was then that I was put on ECMO. At that time my heart went into a rhythm called V fib, meaning it was just fluttering, but not beating and pumping blood. And my heart had to be shocked. This was sobering to hear, but at the same time, it gave me a sense of relief knowing that these precious new lungs came at just the right time. My lungs had worked so hard for so long and just didn't have much more to give. Thank God for His perfect timing.

I'll stop there for now and the next post will be about my roller coaster recovery and 54 day hospital stay.

June 30, 2016

It's been a long time since my fingers have typed out a blog post. I don't know if anyone will even read this. How do folks happen to find blogs these days with Instagram and facebook and who know what else taking over? An old blog friend commented on my Instagram recently and recalled the old blog days when my dining room was a sewing room, and I had a burning passion for sewing and creating. I miss those days.

So, what have I been up to? Why so long away from my creative space? Well, initially I was occupied by a new grandchild. That new baby just turned 8. For a long time she was my excuse. "Oh, I haven't really had time to sew since Bayleigh was born." "I'd rather spend time with my granddaughter than sew"... Then she got older and spent less time at Nana's house because she had to go to school. What then was my excuse? I was dying. I didn't know it, but I was slowly dying. Doing less and less month by month, day by day. My lungs were losing there ability to provide the oxygen my body needed to fuel my daily activities. I was to the point I spent hours on the couch. Inside I felt like I was just lazy or unmotivated. I would do a little laundry, maybe make the bed and my energy would be spent. I was in denial about what was really happening. My weight hovered around 90 pounds because my body was working so hard to just stay alive.

I had known for years that one day I would need a double lung transplant, but wanted that day to be many years from now. Deep inside I hoped and prayed for some miracle drug or treatment that would heal my lungs and never need a transplant. You see, I had always been told scary stories about life after transplant. For one, it was likely short. Around 10 years if you're lucky. A life of taking lots of medicines to stay alive. Medicines with toxic side effects. It isn't a pretty picture they paint for you, those transplant docs.

In September of 2015, during what I thought was a routine check up at the transplant clinic at Duke, the doctor looked at me and dropped a bomb that left me a little dizzy and shell shocked. I really felt like he punched me in the stomach. He said "You are in your window, you need to begin making arrangements to relocate to Durham to be actively listed". Why was this a shock? I was at the transplant clinic, after all. I've been followed by transplant doctors for 15 years. First at UNC now at Duke, and always told I was stable and not in my "window". That's what they call it when they think you are sick enough for transplant but not too sick to endure the grueling surgery and recovery. So, for 15 years I've been keeping on, shocking doctors with how well I was getting along with such poor lung function. The words I didn't want to hear were exactly what I was hearing.

Things happened pretty fast after that. In fact they seemed to fall right into place. I never would have imagined we could afford to establish a second residence in another city, but what a blessing, our insurance has a travel and lodging benefit for transplant patients. We found a wonderful apartment minutes from the hospital and the rehab facility. The ground floor apartment had just been vacated. There is usually a wait list! We moved in October 4th and began what I call my transplant journey.

I'm going to stop there and follow up with part 2 tomorrow. There will likely be a part 3 and 4 too. It's a long story and who has time for that these days?

I'm so excited to be getting reacquainted with my dusty old blog but most of all my blog friends! I've missed you.